CA 27-29 numbers rising: Does anyone else have an issue like this?

Welcome @rra815, As @eku noted, there is an extensive discussion about CA 27-29 marker. I took the liberty of moving your question to the existing discussion here:
- CA 27-29 numbers rising: Does anyone else have an issue like this? https://connect.mayoclinic.org/discussion/ca-27-29-consistently-high-in-the-40s/

You ask "Is there a better way to test for recurrence?"
My understanding is that indications of recurrent breast cancer are based on results of mammogram or physical exam, or because of signs and symptoms. Then additional tests are done to confirm the diagnosis. Some oncologist may use CA27-29 along with regular mammogram, but it can be unreliable and is never a definitive indicator. Further testing must be done to confirm.

At the SABCS (San Antonio Breast Cancer Symposium), there were presentations on using circulating tumor cells to detect recurrence/detection. In one study, they found CTCs 7 months before any indication on the scans. You can start asking about it to your oncologists to create awareness. Then again there's the issue of whether the insurance will cover it.

Glad to hear that.

Hi eku. As a stage 4 BC patient I receive both the CA15-3 and CA27-29 tumor marker tests monthly. Many of us stage 4 get them regularly but it's been found they are not necessarily reliable. I have one friend in australia who is stage 4 7+ years with metastasis throughout her body and her CA27-29 sits at 19, perfectly normal. Others in our group have had good response to treatment and are "stable" yet their tumor markers do not reflect that. We count on our scans to signal progression or stability, not the tumor marker tests. Now, they do watch for jumps in numbers as sometimes that will trigger a CT scan to be done earlier (rather than the normal every 3 months or so). I think that's where they are right now in that they just aren't reliable enough.
Peggie

Hi, I'm new here. in Nov 2020, my wife was diagnosed with stage IV breast cancer-(hormone receptive) it has metastasized throughout her spine, and is in most of her bones. She takes Verzenio daily, gets scans every 3 months, sees oncologist and gets Zometa, and Faslodex every 4 weeks-(on this last visit we got him to change the Zometa to every 3 months, after we researched it and thought maybe it is causing some of her pain). Upon diagnosis she was in really bad shape, after months of treatment she improved, but recently her pain has been getting worse-(she wears a patch, and has some oral pain meds), her most recent CT showed no growth. That's the short of it, our concern is with her CA 27-29, her oncologist tells us not to pay too much attention to it. Upon diagnosis it was 676, it went down with treatment, and stayed between 90-105, 6 months ago it was 121, and has continued to go up, last week it was 213. Her Oncologist is an optimist, and won't give any prognosis, maybe we shouldn't worry, but with the severe pain, fatigue, high CA, we're wondering if the CT scans are missing something.. Does anyone else have or has had CA numbers this high?

Good morning Sam. If you saw my other comment, I'm not a fan of the CA27-29. I personally haven't found it very trustworthy. That being said, your wife showed obvious response to the verzenio combo when her numbers took such a huge dip. Sometimes the minor blips 90-105-121 are nothing. Oh, and each person is different. I think "where" the mets are makes a difference as I've seen women with liver mets that numbers go into the thousands. My numbers are on a similar trajectory right now (90-104) and I am also on Faslodex but with Ibrance instead of Verzenio. I have had some progression in my femur met that we are radiating to see if that knocks it down, stops the pain and makes a difference in the numbers (without changing my meds).
Is her pain of the all-over aching-joint type? Being on Zometa tells me she is pre-menopausal? If that's the case it seems to me anyway that being hormone+ is harder because younger women get smacked with the stoppage of hormones. Even for us older gals (I'm 61) my joints hurt all over when I started the estrogen blockers and I had not nearly the amount to "block".
After about 7 months I adjusted. Also, the fatigue is the meds for the most part, and her pain could be adding to it.
So much comes down to where is the pain (spine, other bones?), is it somewhere where it may be pressing on a nerve? I'd press the doctor for a closer look if the pain is up there to see if there isn't something they can do to alleviate it. Sometimes radiating small spots can give pain relief.
Feel free to respond if you'd like and maybe we can figure it out.
Peggie

Peggie,
It wasn't until after I made my post that I saw yours-I'm still learning how to navigate this site. Thank you for your kind reply, it was encouraging, as far as the CA not being very trustworthy, especially when I read that most women's numbers are in the low double digits. My wife, Jen, will be 61 in Feb., her pain is all over; joints, spine, ribs, hips, metatarsals, etc., the most severe pain recently is at the base of her skull and throughout her cervical spine. Being that most of the cancer is in the spine and that she had the fractures, nerve pain is a huge possibility, she tried Gabapentin, but didn't like the side effects. At diagnosis she had multiple compression fractures in her spine. About 8 months ago she went to see a rheumatologist, he prescribed Diclofenac, the assumption was that as her bones were healing from the treatment it was causing arthritis, the diclofenac has helped. Her last Onc. appt. was almost two weeks ago, she is waiting to hear back from someone to get a consult on radiation, my concern with radiation on the neck is that the esophagus is so close, but I'll wait until we get a consult so that I can get fully educated on the pros and cons of the procedure. How long ago were you diagnosed ? I'd love to hear if the radiation on your femur helps. May I ask if you have LDH and CEA tests as well, if you don't want to share-no problem. Jen's LDH was 1000, and the CEA was 13 on her last visit. Thank you again, Sam

Hi Sam. Sorry you and your wife are having to deal with a stage 4 MBC. I received that same diagnosis 1 1/2 yrs ago, a recurrence from 2006. I’m mets to the bones (everywhere, mostly pelvis, legs, spine) and liver. My onco said that I lite up like a Christmas tree on my first PET scan. At that time my 27/29 was in the 2000’s. We got it down to the 600’s pretty quick with Ibrance/Faslodex, and when they stopped working with Afinitor/can’t recall the combo (post menopausal meds). The 27/29 never went below 300’s. We use the 27/29 as an indicator only and rely on a scan of some sort for a diagnoses. I’m curious that your onco is using CT scans whereas mine relies on PETs and your wife and I have the same diagnosis? If you think the CT is possibly missing something you could ask for a PET.
Fatigue is a constant (extreme) and I agree with another reply that it comes from a combo of the meds, pain/extreme discomfort, and in my case the inability to walk well let alone exercise. I don’t think there’s much that can be done to improve fatigue. It was suggested to me that I might be depressed which wasn’t the case but I can certainly see how it’s possible. All the best to you both.
Adana

Hi Sam. I'm so sorry your wife is going thru such issues; much more than I had imagined. Having a bit of her history now it becomes much clearer. I've had the same base of skull and C2 - C7 issues. They have waffled between 2 spots that lit up on my bone scan, thinking metastasis to arthritis. I also have compressed discs but have not, thankfully, suffered any fractures. I don't have any real experience in that area but it sounds like her doctors are on top of it with treatments to try to control the pain. As far as the radiation, they were thinking of doing my neck but decided to wait and see if there are any changes. They had forewarned me that there would be some temporary side-effects to the Esophagus (a couple weeks of a burning type feeling). I know others who have had radiation to other areas of the spine/ribs that unfortunately have that same effect along with some heartburn type feeling. We are all different though and as such may or may not suffer the same effects.
I do not have LDH or CEA tests. Also, I was diagnosed stage 4 in April of 2019 although I had never been early-stage.
Feel free to communicate if you like or if your wife would like someone to talk to.
Peggie

Adana,
I'm sorry to hear of your situation. I'm floored that your 27-29 was in the 2000's, I didn't even realize that the numbers got that high. I can't imagine being in your situation and not being depressed, thankfully my Jen has a great support system of family, friends, antidepressants, and myself to help keep pull her up when she gets down. To answer about the scans, she gets them every three months. She was started with a PET scan, and has had three over the past two years, there have been a lot of MRI's, and the last four sets of scans have been CT's and whole body bone scans. I don't know how her Onc decides which types of scans need to be done, but that is a great question to ask next visit. I hope you have someone by your side during your journey.
Sam